Collaborative student research project Diabetes in children; a global, comparative study. Prof. Borghild Roald. Oslo, July 2010.

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1 Collaborative student research project Diabetes in children; a global, comparative study. Prof. Borghild Roald. Oslo, July University of Oslo The Faculty of medicine Background information: A student thesis is a compulsory part of the medical degree from the University of Oslo. A group of medical students have chosen to do combined survey and interviews related to how children with diabetes mellitus (DMtype 1 and type 2) are diagnosed, treated and followed up throughout the world. The standardized electronic questionnaire created is largely based on the international guidelines posted by International Society for Pediatric and Adolescent Diabetes (ISPAD) and ADA (American Diabetes Association). Project description: The students in this project go to various countries in the world for a combined survey of pediatric DM and clinical experience in pediatric wards or clinics dealing with children and childhood diseases including DM, joining and helping in the daily clinical rotations and work in the ward/clinic. While they are at the ward/clinic they will do interviews related to the standardized questionnaire regarding the local routines for diagnostics, treatment and follow up of pediatric patients with DM type 1 and 2. Through the comparative survey, the idea is to identify the national/regional or local modifications that are made in the various countries, and discuss the challenges, obstacles and restrains and the ways they are met throughout the world. Due to legal restrictions, the survey will not include patient identifiable data. The students go in pairs of two to three for a four to six weeks period during their summer leave from the University of Oslo. They are experienced students in good academic standing with good theoretical and practical/clinical competence. Each student will write their thesis related to their experience in the chosen country, with an extra focus they choose by themselves with themes varying like Diabetes in children in India, with focus on nutritional problems. The final goal is an article in an international peer reviewed journal, comparing the data and strategies from the electronic questionnaires from the included countries: Diabetes in children; a global, comparative study. The plan is also to present the findings at national and international meetings related to pediatric DM. The countries that are included at present are various parts of Norway, USA (Orange County/California and Minneapolis /Minnesota), Australia (Melbourne and Alice Springs), India (Pune) and Canada (Vancouver and Toronto). Other countries will be included, now firstly Finland, Argentina and South Africa. In Argentina (Buenos Aires), the projects will be undertaken in collaboration with local medical students and/or doctors. Supervisors for the students at the University of Oslo are consultant in Pediatrics at Oslo University Hospital Torild Skrivarhaug, MD PhD (torild.skrivarhaug@medisin.uio.no) and professor Borghild Roald, MD PhD (borghild.roald@medisin.uio.no). Dr. Skrivarhaug has broad clinical experience in pediatric DM and is the head of Norwegian medical quality registry for pediatric and adolescent diabetes and also a member of ISPAD.

2 QUESTIONNAIRE DIABETES (T1D and T2D) IN CHILDREN: A GLOBAL PERSPECTIVE ( ) The questionnaire is designed to gather information about children with diabetes 15 years of age. The interview is in two parts. Each part should not last more than 1 hour. QUESTIONNAIRE DIABETES IN CHILDREN... 2 PART Incidence... 3 Prevalence... 4 Mortality... 4 National health... 4 Patientsorganisations... 4 Register for diabetes... 6 Complications... 7 PART Hospitalizations and number of beds... 8 Diagnostics... 8 Treatment and follow up Treatment goals Quality of life and mental health: Complications... 14

3 PART 1 Incidence 1. The annual incidence of the different types of diabetes in this country (enter the number and percentage) Type 1 diabetes (T1D) Type 2 diabetes (T2D) Gestational diabetes 2. The incidence of T1D and T2D among children under 15 years of age o The total incidence: o How is the distribution in the following groups of ages (estimated): o <5 years o 5-<10 years o 10-<15 years o > 15 years 3. What is the gender distribution among children with T1D and T2D in the country? 4. What are the overall proportions of the following ethnicities in this country: o White / European background (non-hispanic whites) o Black / African background o Middle-East / North-African o Indian subcontinent o East-Asia o Middle- and South American (Hispanics) o Indigenous (specify) o Mixed (or unclassified) 5. How many children with diabetes in this country are o White / European background (non-hispanic whites) o Black / African background o Middle-East / North-African o Indian subcontinent o East-Asia o Middle- and South American (Hispanics) o Indigenous (specify) o Mixed (or unclassified)

4 Prevalence 6. What is the prevalence of T1D and T2D among children in the following groups of age? o <5 years o 5-<10 years o 10-<15 years o 15 (adults) Mortality 7. What is the average life expectancy in the country? o Women: o Men: 8. What is the average life expectancy among patients diagnosed with T1D before the age of 15? o Women: o Men: National health 9. How many doctors per citizen? (This will differ depending on location; city, rural, town etc) 10. Is there a geographical difference in availability of doctors? 11. What is the gross domestic product (GDP) of the county? 12. What is the total expenditure on health as a percentage of the GDP? o Which proportion is financed by the public? o Which proportion is financed by private actors? 13. Which proportion of the national budget is spent on health? 14. Does the public health care system finance the costs associated with diabetes medication and equipment? 15. If the answer is yes on question 14, which medication is financed? o Insulin % financed o Antidiabetic drugs

5 Glucagon % financed % financed 16. If yes on question 14, which of the following materials is financed o Syringes: o Needles: o Insulin pen: o Insulin pump: o Materials for the insulin pump: (needle, catheter, reservoir etc): o Home Blood Glucose meters: o Blood glucose test strips: o Finger-pricking devices: o Lancets for finger-pricking: o Continuous subcutaneous glucose monitoring devices: o Urine sticks to check for ketonuria: o Other: 17. If the answer is yes on question 14, does the patient have to pay anything? If so, how much? (%) o Syringes: o Needles: o Insulin pen: o Insulin pump: o Materials for the insulin pump: (needle, catheter, reservoir...): o Home Blood Glucose meters: o Blood glucose test strips: o Finger-pricking devices: o Lancets for finger-pricking: o Continuous subcutaneous glucose monitoring devices: o Urine sticks to check for ketonuria: o Other: 18. Who brings the child to their check-ups? o Mum o Dad o Other: (specify) 19. Are there any laws/public rights for parents to get extra time off work to take their children to check ups?

6 20. Are parents with chronic ill children allowed to take additional days off compared to the general population? ( number of additional days) 21. Are there national guidelines for the management of children with T1D and T2D? Patient organizations 22. Are there any national organizations for patients with diabetes? o For children? o For children and adults? o For adults only? 23. Are there any local organizations for patients with T1D? o For children? o For children and adults? o For adults only? Comment: 24. What do the patient organizations offer the children and their parents? o Websites o Telephone o Courses o Information meetings o Holiday offers / camps o Other: Register for diabetes 25. Is there a national diabetes register?, for children, for adults, for adults and children

7 26. If yes, what data is registered? Does it include both T1D and T2D? Complications 27. What is the incidence of acute diabetes complications among children under 15 years of age? o Diabetic ketoacidosis (with hospitalization) o Severe hypoglycemia (unconscious with or without convulsions) 28. What is the incidence of late diabetes complications among children under 15 years of age? (estimated percentage) o Retinopathy o Nephropathy o Neuropathy

8 PART 2 Hospitalizations and number of hospital beds 29. How many children <15 years with diabetes are admitted to hospital annually in the following wards (The total number of hospitalizations including rehospitalization) o Paediatric ward o Adolescents ward o Internal medical ward 30. To what age are the children managed in the paediatric wards? 31. If there is an adolescent department, when do the children start attending and how long can they attend there? 32. What is the maximum number of beds in the ward? 33. How often has the ward been full during the last 6 months? (regardless of the reason for the hospitalisation) 34. How many children with diabetes are followed up at the local hospital today? 35. How is the gender distribution among the children that are followed up at the local hospital? 36. Who takes over the responsibility for the treatment and follow-up after the diagnosis of diabetes? o Specialist (which type) o General practitioner (GP) o Other : Diagnostics 37. Who usually make the diagnosis?

9 o General practice o Specialised health service o Nurse o Other: 38. What is the average age at diagnosis? 39. What are the classical symptoms that make the patient and his or her parents contact a doctor? 40. Which diagnostic criteria have to be fulfilled to set the diagnose of diabetes? T1D o International guidelines; ISPAD (Blood glucose) o Other guidelines: T2D o International guidelines; ISPAD (Blood glucose) o Other guidelines: 41. Where are recently diagnosed juvenile diabetics treated the first time? T1D o Out-patients clinic o Hospital ward with beds T2D o Out-patients clinic o Hospital ward with beds 42. If the patient is admitted to hospital, what is the average length of stay? T1D: T2D: 43. Which diagnostic criteria do you use for DKA? o Hyperglycemia o Standard Bicarbonate (< 15 mmol) o ph (< 7,3) o Ketonuria / ketonemia 44. What proportion of children has DKA at diagnosis? T1D: T2D:

10 Treatment and follow up 45. Who participates in the treatment and follow up of children with diabetes? o Nurse o Doctor o School nurse o Social worker o Nutritionist o Psychologist o Other: o Multidisciplinary team 46. Does the child with diabetes have one particular contact person? If yes, specify: : 47. When the diagnosis is made who is responsible for the follow-up? o Specialist (doctor / diabetologist) o Hospital doctor o Nurse o General practitioner o Other: 48. Who are educated (at the time of the diagnosis, and after discharge)? o The child o Parents o School o School nurse o Nursery o Activity leaders/coaches o Others: one 49. Does the hospital have access to interpreters when they have patients that do not speak/understand English? 50. How is the education organized? o Training in groups o Individual training o A combination of both 51. When is a new education organized? (re-education) 52. Is carbohydrate counting used systematically when calculating the insulin bolus in relation to food? 53. How is the education organized? o Training in groups o Individual training o A combination of a and

11 Comment: 54. How much do parents participate in the treatment and follow up? 55. Do the adolescents get contraceptive counselling? (comment ;) 56. Have you experienced unintended pregnancies in this group of patients? (how many? what are the characteristics of these patients; ethnicity, socioeconomic status etc?) 57. What types of treatment/treatment regimens are available for children with diabetes at the local hospital? o Syringes o Needles o Insulin pen o Insulin pump o Continuous Subcutaneous Glucose Monitoring o Others: ne 58. How many patients use multi injection (insulin > 3 times a day) therapy? 59. What proportion of the patients (in number and percentage) follow the different treatment regimens listed o Insulin pump: o Others: ne: 60. Among the children under multi injection therapy what type of insulin preparations are used? (%) o Premixed insulin preparations o Intermediate-acting insulin + rapid-acting insulin o Analogues o Which combinations: o Are there any different strategies for insulin therapy concerning the child s age? 61. Who does the patient and his or her parents contact if the child is acute ill? o Specialist o Contact person o GP o Emergency room

12 o Other: Treatment goals 62. Are the ISPAD treatment goals adhered to? (ISPAD = International Society for Paediatric and Adolescent Diabetes) o If no, which guidelines are used 63. What are the treatment goals o HbA1 c < 7,5 % o Other: 64. What proportions (%) of patients achieve the treatment goals? 65. How often do the children attend diabetes health check ups? T1D: T2D: 66. What proportions (%) of the patients attend their appointment? o Most patients o 50 % o Only a few 67. Who does not attend? Why? What are the characteristics of these patients? 68. Is there a screening program for autoimmune diseases? 69. If yes, witch diseases are included in the screening o Celiac disease o Hypothyroidism / hyperthyroidism o Others: 70. If yes, how often is the screening performed o At each check up o Annually o Other:

13 71. Are there any screening program concerning late diabetes complications among children with diabetes? 72. If yes, what kind of late diabetes complications are included in the screening program among children with diabetes? And which methods are used in the screening o Retinopathy: o Nephropathy; o Neuropathy: o Angiopathy: o Others: 73. If yes on question 70, how often is the screening performed o At every check up: o Annually: o Other: Quality of life and mental health: 74. What assistance do the children with diabetes and their parents receive in relation to: o School o Hobbies o Sports 75. Are there social activities arranged for the children and their parents? 76. What kind of social activities are arranged? And who organises them? 77. Have you conducted/do you conduct research on the quality of life in the children with diabetes? If yes, can you elaborate

14 78. Are intoxicants a problem among children with T1D and T2D? o What kind of intoxicant? o What are the characteristics of these patients (gender, ethnicity, socioeconomic status etc) Comment: Complications 79. What is the incidence (percentage) of acute diabetes complications among children with T1D and T2D under the age of 15? Type 1 diabetes o Diabetic ketoacidosis o Severe hypoglycaemia with unconsciousness and/or convulsions o Other: Type 2 diabetes o Diabetic ketoacidosis o Severe hypoglycaemia with unconsciousness and/or convulsions Other: 80. What is the incidence (%) of long-term complications among children under the age of 15 years? And how old are they? Type 1 diabetes o Retinopathy: How many have been treated with laser? o Nephropathy: o Neuropathy: o Hypertension How many get anti hypertension treatment? Type 2 diabetes o Retinopathy: How many have been treated with laser? o Nephropathy: o Neuropathy: o Hypertension How many get anti hypertension treatment? 81. What is the incidence (%) of long-term complication among adults who got the diagnose of diabetes before they turned 15 years? Type 1 diabetes:

15 Type 2 diabetes: The following must be discussed: o How old were the patients when they where diagnosed with diabetes? o How many years diabetes duration at onset of the late complication? o Retinopathy: o Nephropathy: o Neuropathy: 82. Is overweight a problem among children with diabetes? Type 1 diabetes o If yes: o Are there any differences between gender, ethnicity, socioeconomic background etc? o In which group is the prevalence of overweight highest? o What kind of prevention and treatment regimens does the hospital have? o Are the treatment regimens effective? o Do children with overweight in practice have significant more complications than children with normal weight? o Are there other problems related to overweight and diabetes? Type 2 diabetes o If yes: o Are there any differences between gender, ethnicity, socioeconomic background etc? o In which group is the prevalence of overweight highest? o What kind of prevention and treatment regimens does the hospital have? o Are the treatment regimens effective? o Do children with overweight in practice have significant more complications than children with normal weight? o Are there other problems related to overweight and diabetes?